Little did Julia V. know that her troubling symptoms as an undergraduate were a precursor to a life-altering brain tumor diagnosis in college and a profound understanding of the patient experience as a health care professional years later.
During her junior year at Washington University in St. Louis, Missouri, majoring in microbiology and anthropology, Julia began experiencing horrible headaches, moments of zoning out, and fatigue. She then suffered what she would later know to be a seizure the day after returning from a travel tennis tournament.
Julia was admitted to the hospital at an extraordinarily busy time for the ER — there had been a massive car pileup on the highway in town. “I was very much dismissed,” Julia explained. “I didn’t get a full workup and had an hour of observation before they discharged me. I went back to my daily life because no one told me it was a seizure.”
About three months later, Julia experienced another partial seizure — also known as a focal onset aware seizure — while sitting down to take her stats final. She visited her student health center, who said it appeared to be resolved and to get it checked out when she returned home for the summer.
Upon returning home for the summer, Julia underwent a full neurological workup, including an MRI and an EEG. The scan uncovered a golf-ball size mass in her brain, and surgery was scheduled for two days later. Pathology determined it was grade 3 anaplastic astrocytoma.
A Second Surgery and a Clinical Trial
“Being young, I wanted to make sure that I had the best chance for a long, full, and active life,” said Julia, who was 21 at the time of her diagnosis. “I wanted to try something new and improve my chances for a long-term outcome, but I also was not willing to do something where the odds of death were higher than the odds of benefit. We started to look around and found Northwestern, which had one of the only clinical trials for my tumor type.”
After meeting with many doctors and surgeons at Northwestern, Julia and her family spent a month deciding her next steps because her tumor was located in front of her motor cortex. By removing more tumor tissue there, she faced paralysis and a loss of cognitive function and executive decision-making. She opted to undergo an extremely aggressive surgery in which they removed about one-fifth of her brain.
“The entire front part of my brain on my right side is missing,” Julia said. “Another reason why we opted for the surgery was because, at the time, one of the doctors at Northwestern was doing a trial with an oncolytic virus, and you can only get this virus injected into your brain during surgery. As I was getting my radiation on an expedited timeline, it was activating this virus to go after any remaining tumor cells.”
In the summer after her junior year, Julia underwent two surgeries, spent two months at an inpatient rehab facility after being temporarily paralyzed on her left side, and finished radiation two days before starting her senior year of college.
“The second surgery is essentially what I credit my good outcome so far — that and a couple of clinical trials,” Julia shared.
Returning to College
Starting back at college was a challenge for Julia.
“I knew all my doctors and psychiatrists at the hospital were saying, ‘You can’t go back to school; it’s going to destroy you,’” Julia said. “I was like, ‘No, I have to go back. If I don’t go back, I’m going to be destroyed.’ I was very clear about what I wanted and how I wanted to do it. I was lucky that my parents supported me.”
Julia’s parents, Klaus and Sigrun, rented an Airbnb near her university for the week of chemo and then would add a week before or after chemo if Julia had a more difficult time with that chemo round.
“I was able to take a reduced course load — three classes in a semester instead of four — and only took the classes I had to take,” Julia said. “It was hard, and I had to learn to ask for help, which is not something I had previously done. I had two fantastic roommates who would help me with laundry if I couldn’t carry it, and they would drive me when I wasn’t allowed to drive. They were there for me and made sure I was OK.”
In addition to the challenges of navigating a college course load while going through chemo, Julia also struggled with losing her hair from radiation.
“As a young person, losing my hair bothered me a lot,” Julia explained. “I lost all of the top of my hair, so I had a funny mullet going. I tried a wig, but it just looked so unnatural on me, so I wore a hat my entire senior year of college. That was hard. I don’t care if I feel sick — I just don’t want to look sick and be known as the cancer patient.”
At first, Julia kept her diagnosis to just family, her closest friends, and people who had to know. As she grew more comfortable, Julia began to tell more people and occasionally wore her wig out.
Becoming a Patient Advocate
During her senior year, Julia organized a community fundraiser at Washington University benefiting the National Brain Tumor Society (NBTS). Given her love for neurology and newfound connection to NBTS, Julia wanted more opportunities to get involved with the organization. She began serving as a patient advocate at NBTS’s Research Roundtable sessions in grad school.
“In the discussions between the regulators, the scientists, and the doctors, I have an opportunity to provide the voice for the patient and say how I would feel about this or how this would impact me,” Julia said.
In the most recent Research Roundtable discussing the integration of external/historical controls into clinical trials, Julia advocated heavily for the implementation of external controls, highlighting how this would provide more opportunities for more patients to try experimental treatments. Julia shared in the meeting how she only picked trials in which she knew she would get the intervention and would have walked away if she was in the control arm.
“It gives me a sense of purpose,” Julia said. “It allows me to take an unfortunate situation that I had in my life, make the most of it, and hopefully help people in the future. I want to make sure that patients in the future have access to everything I had access to and don’t have to go through the same hurdles and problems that my family and I had to go through.”
Enrolling in Additional Clinical Trials
Following the clinical trial that paired with her second surgery, Julia enrolled in two more clinical trials. She withdrew from one due to side effects and is currently participating in a trial with a neoantigen anticancer vaccine.
“They sequenced my tumor, and there are a number of antigens unique to my tumor in this vaccine,” Julia explained. “I go to St. Louis for an electroporation vaccination, where I get three pulses of electricity that help distribute it throughout my body. The goal is to generate an immune response specific to my tumor, so the theory is that my body should attack and kill any tumor cells if they arise.”
The Clinical Trial Enrollment Process
Searching for and learning about clinical trials can feel daunting for many patients. Hearing about other patients’ experiences can help make the process feel more approachable, so Julia was eager to share her experience with NBTS:
Julia searched for clinical trials online.
She contacted the doctor or the study’s principal investigator, who then put Julia in contact with the clinical trial coordinator.
Julia then spoke with the clinical trial coordinator and set up a time to come in, review the paperwork, and get her information.
At the appointment, she signed the paperwork and scheduled the first couple of appointments once she agreed to participate.
Altering Her Post-Graduate Plans
Before Julia’s brain tumor diagnosis, she had planned to immediately pursue a PhD in microbiology upon earning her undergraduate degree because it had been her passion for years.
“After my diagnosis, I realized I wanted to have more of an impact on people,” Julia shared. “While microbiology can help people, it’s more indirect.”
Julia worked in a Parkinson’s disease lab to gain wet lab science skills during her gap year after undergrad. When COVID hit, and she was deemed nonessential and laid off, Julia obtained her Master of Public Health (MPH) in global health, nutrition, and genetics from Emory University.
“For now, I am working in clinical trials, helping patients in the ICU who have brain bleeds, connecting them to innovative protocols, and presenting them with their trial options — being somebody that I wish I would have had as I was going through my diagnosis,” Julia said.
It means a lot to me because I feel like I’m in a unique position where I can understand more about what these patients are feeling. Not a lot of doctors or even nurses have had a super traumatic health experience that put them in the ICU for weeks on end. While they may have more training and knowledge than I do, what I can bring to my position is the empathy of understanding their fear and pain. I try to be a calming presence and help patients make the best decisions for them.
NBTS Clinical Trial Finder
Understanding which clinical trial may be best for you or a loved one can be confusing and overwhelming. NBTS’s Clinical Trial Finder allows you to search for a local trial treatment for a specific tumor type.
Increased participation in clinical trials helps facilitate brain tumor research and accelerate the development of new drugs and treatments for patients.
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